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Everything posted by surfgirl14

  1. I am on midodrine and mine usually just get low. But sometimes in can spike a little bit. If it continues just consult your doctor. Try not to worry to much. I know it can be sacry at times expecially when you are put on new meds. Hugs
  2. I find this interesting due to the complication I had from them. I was perscribed them at the hightest compression (waist high ones) , and after only a couple days of wearing them I devloped severe itching and swelling of my right leg. After about the 4th day I stopped wearing them all togather and made a appointment with my pediatrician. When I went my appt she suspected a blood clot and sent me to the emergency room. Luckily it was not a blood clot, but was told that the compression was too much for my body to handle. Ironicly it only affected my right leg, but could of spread to the left if I continued to wear them. BUT my case was very rare and most people are fine when wearing them. I don't want this to scare anyone. I was advised to just wear them now when my condition is bad enough to warrant me having to put them on. I no longer wear them every day, like I was. I am in now position of giving medical advice and if your compression stockings work for you then please continue to follow your doctor advice with them. Just me personally, I did not have a good experience.
  3. really? thats excitng ill message you!
  4. ok thanks everyone! much appreciated.
  5. I think family and me are going to wear awareness t-shirts that I have been selling that are raising awareness
  6. I am so excited yay! this is awesome. I will be there.
  7. You know what guys I got that all wrong. It is a naturopathic NOT neuropathic.
  8. ken870- OMG this is sooo super exciting! I live in North Carolina about an hour out form where this is going to be. I have always wanted to be apart of a awareness thing for dysautonomia. Could you give me more information? Is it going to be a big event , with lots of people? I and my family will def go , that would be something we (expecialy my mom and me) would look foward to .
  9. Hey Guys. So my mom's friend Amy, just told my mom about this neuropathic doctor her daughter just recently starting seeing. Her daugher is 16 so the doctor she sees treats pediatric patinets through adults. Amy told us that the doctor is really good, and spent over an hour with her daughter. I am despearate for alternative ways to cope with my POTS but am also iffy on the idea of going to a neuropathic doctor. I did go to a pediatric integrative doctor a couple months back.... is that the same kind of doctor? Has anyone on here seen a Neuropathic Doctor? Experiences? What was it like? Any info would be much appreciated. My mom is pretty serious about taking me to this doctor so I am a bit nervous on what to exepct if I do go. And also I don't want to go if it wouldn't be worth it. I don't want the doctor to tell me what to do and so forth (example: tell me to stop taking meds that are working for me, trying to tell my mom to take me off the IV saline that works magice for me). I mainly want to go there to get pain relief. Thanks. Hope everyone is doing well. Wishing everyone a happy and healthy year Hugs
  10. Hey. My doc is willing to try whatever will help me, so he let me do it. And the reason i do it is it helps with my tachycardia and fatigue.
  11. Hey guys so basically I have a couple questions. The first one is. Should my doctor of told me more about this port they put in? Well basically my POTS doctor who is a peds cardio wanted me to get a PORT put in for my IV saline infusions. So I had it put in about 4 weeks ago. He never called to check up on how it went or anything. I don't see him again untill late August. Also he never told us how long he is planning for me to do the treatments, etc. I am a bit concerned with his lack of concern with follow up care. Now he is a great doctor, but the only thing that makes me irratated with him is the lack of follow up he has with me. The only thing he does is email us but that is when we contact him. It is almost like we are on our own untill the next appt, unless we contact him through email. Ok next question: Where I should go if I am sick, or need to be admitted? Ok so I know you guys can't like answer this but basically just wanted to put out this quesion as to what would you guys do in this scenerio. My doctor never told me which hospital I should go to if needing to. Not sure if I should just go to our hospitals or go to the one my POTS doctor practices at. So I live in charlotte and my POTS doctors practics at Duke Childrens in Raleigh. When I need to go to the hospital, I am not really sure on where I should go. I really rather drive the 2 1/2 something hours to go the their Peds ER. I say this because they know more about my condition and I can be at the hospital my doc practices at. OK but here is the problem... mom says that it is not worth the drive and I can just stick to the hospitals down her sigh What would you guys do? Last question: lol so this is kinda totally unrellated to the questions above hah but here it goes. It is starting to get hot where I live, and my friends are starting to ask me to go outside and tan with them. I can handle it for a little bit of time but not much. But I have a chest port, is there any special percautions I should take with it in the sun? LOL idk if that sounds right. I just don't know if you are aloud to put (tanning lotion on it, or are aloud to have it exposed to the sun for a while?) Sorry this is so long. I just had a few questions, and so I just put them all in one topic to make it easier. Hope they make sense. LOl Hope everyone is doing well, and best wishes to everyone! Hugs
  12. Hey. Had a question about Dr.gelmisky (the wife) Not sure if i spelled the docs name right lol but worth a try. Anyways saw ur post about how ur son saw both of them. I was told about the wife pediatric Gastro from my ped cardio at Duke Childrens, to go to for my stomach. The drive is far. Is she really good? And also I am 18 , do you know if she see young adults? And where she works at? I researched and I think she is at 2 diff locations not really sure. Thanks.

  13. I am currently on IV saline. It helped me right away. I began to feel the affects within an hr of having saline. I get 2L with lactated ringers once a week. The only downside is it isn't long lasting about 48hrs. Also if he is going to do it long-term considering get a PORT put in. I had one put in about 3 weeks ago.
  14. Hey puppylove. I am right here with you on that. I have had lots of stomach issues too. They ordered a test for gastroperisis but we don't see the point in me getting the test so were not going to do it. Almost every test I get turns out negative anyways. But I was told I had IBS which is Irratable Bowel Syndrome. Feel free to look up the symptoms and see if they match you. But what is weird is for me, I have lots of other stomach issues that don't relate to IBS. Yea it frustrating, I completely understand. Hang in there. I am on a medicne called Bentyl that works for my stoamch cramps I get. I too have been to the ER several times but for severe stomach pain. I also have bad nausea and they give me zofran and now I wear a patch behind my hear (not really sure what its called) ..... I dnt notice the patch helping me. Nothing really seems to help my nausea. Hope you get better. If you can't eat at all, and can't keep anything into your body ... I would consider letting your doctor know that. They admitted me last summer do to sever nausea and difficulty swallowing which causes me to not be abel to intake food or drink. People with POTS are more succeptable to dehydration and you do not want that to happen. HUgs p.s.- try not to worry so much, I know it is hard not to. I have to tell myself a lot to just breath and that POTS isn't life-threatning. Make sure to tell your doctor everything that is going on if it gets worse. Usually talking to my doctor or my mom talking to my doctor.. puts my mind at ease.
  15. Thanks Kim ill def do that if I need you. If i end up going to the hospital again i will def be making the 2hr trip to duke or be requested to be transfered there i will not deal with the docs down where I live again!
  16. Hey. Sorry to hear that. I personally want to tell you amazing job for trying. I too can understand being a teenager with pots and trying to do things everyone else is doing but having to deal with pots. I can see how frustrating it can be. For me one of my fav things to do is babysit. I love kids! But despite my pots I still push myself to do things that don't put me or someone else in danger. Like I decided to volunteer at my moms friends organization. I just sit on the floor and fold clothes, or sit and work the cash register. So with the doggie adoption thing try to think of ways you could still volunteer but ways that could best accomadate your symptoms. Like maybe there is something you can do that involves more of sitting. Don't give up on something you love! If you love it, keep at it! Just find ways to do it that will accomadate you as well HUgs
  17. Thank you everyone. Yea my doctors are pretty good when it comes to the point where they want me to go to the ER. Usually at tht point they call ahead for me so when I get there I am not waiting for a long time. My port is acessed once a week and it is doing really good right now (minus the pain). Which they infusion oncology nurses say is ok. I have had good blood return and no problems getting fluids into my port. It is just really scary expecially when you think you should call your doctor and your mom is saying "ur jus overreacting, calm down". That gets annoying. Thanks for everyones replies.
  18. Oh also I have a centeral line -smart port- ... not sure if that puts me at higher risk with my symptoms.
  19. Hey guys. So my question is when are your pots symptoms considered serisous? when should you worry and not worry? Some symptoms that worry me the most are: extreme nausea (cant barley eat or drink) High heart rate (140's or above) Pain (from headaches to abdominal pain... sometimes all over pain) Gastro issues (problems swallowing,abdominal issues, diarrhea) Extreme Fatigue/weakness Visual disturbance (blackouts) Ok with that said. At what point should those symptoms be considered serious.... When to go the to er? when to call the doc? I feel like I never know when to be concerned, and if I am concerned is it just that I am freaking out to much? I know pots symptoms are supposably non life-threatning but at some point should you call your doctor or just let the symptoms pass? Sorry this is getting so long. Thanks for reading. Hope everyone is doing well. Hugs
  20. Hey. Yea it wasnt a neuro psych evaul it was just a regular evaulation with quesitons, and such. The girl literally told me though when we sat down ("idk why they sent you here, this is going to be a waste of your and my time") she also said that my doctor form Duke had good info they gave to disability yay! I just really hope they are going to approve me. I really need help with medical bills.
  21. Hey Guys. So I have had a website up for a while now with my story and such. I want to start a fundraiser for me. But I am not sure where or how to get started. I don't want to get into any kind of legal trouble, I am not sure if you can just start fundraising or if you hav to go thorugh paperowrk , lega stuff, etc. I DO NOT want to start a non-profit foundation yet because I don't have the time right now. But I do want to do some fundraising things. If you have any info on; how to get started , legal things , ideas, etc. let me know thanks
  22. Hey. Puppylove I notcied you said the therapist told you it was anxiety and such. I know tht can be frustarting. I went 3 years with ppl telling me that. Was jus going to tell you that if maybe u decide to go back to thearpy if if you want a thearpist.... Try finding one that specializes in helping ppl with chronic illness. They are more likely to understand and even want to learn about what you have to further help you Good luck to you , hope all is well. Hugs
  23. First of all welcome and Hope you enjoy Dinet , it really is a great place If you need anything feel free to message me, Hugs I am sorry to hear that you are having those problems, sadly I don't have those types of issues but I wish you all the best. Hope everything gets better and they can cerate a good treatment plan for you that will work. Welcome to the Fourm
  24. Hey. I am currently in the process right now. I am in Charlotte, NC and I applied in October 2011 and am still waiting. They are making me to a psych evaulation ughh dreading that becuz I know I have nothing mentally wrong it is pure POTS. They say they don't have enough info which I find hard to believe becuz my doctor did lots of testing and every little thing came out super positive for POTS. ugh it irks me I dnt wnt to go to a psychologist ( personally hate them) lol but good luck to you. I am thinking since they are going to get me evaulated and taking so much time to decide that they are really considering accepting me (I hope thats the case) . Anyways good luck to you , and wish you all the best. Kayla
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